Wednesday, Sep. 09, 2009

Disease saps body, not spirit

Sarah Roberts-Witt is doing just fine. Actually, she's doing great.

Four years after being diagnosed with Primary Lateral Sclerosis, a disease akin to the more commonly known ALS, or Lou Gehrig's Disease, Witt is still actively managing the Magnificent Mile, a road race she created to raise money for research into motor neuron diseases such as PLS.

The Magnificent Mile has doubled since its first running on a cold day in November 2006. That year, the event attracted 400 runners and raised $24,000 for the Spastic Paraplegia Foundation.

Organizers hope the 2009 race, set for Sunday in downtown Raleigh, will draw a field of 750 and raise $50,000. The total raised since the event's first planning meeting in June 2006 is more than $100,000, Witt said.

The Magnificent Mile has been Witt's baby, and right now it's all she's focusing on.

"I've been joking that it's a good thing I never had the third child I wanted," she said by e-mail. "Mag Mile fills that role and more!"

PLS has robbed Witt of most of her ability to speak. She is able to utter a few words, out loud and in whispers, but she mostly types out conversations on an electronic message board and uses e-mail to communicate.

The disease still allows her to laugh, which she does loudly and often.

Witt and her husband, Jeff, have two children, Clare, 11, and Will, 6. They live in a sprawling North Raleigh home with a big yard.

Witt was profiled as The News & Observer's TriangleMom2Mom blog's Mom of the Week for Aug. 24.

She's relentlessly cheerful and upbeat, while maintaining a healthy perspective about her condition.

"This situation is a big drag, and at times gets me down," she said. "But I'm also incredibly fortunate. My material needs are fully met. I have an excellent support network of friends and family."

Witt has discovered Facebook and is adding friends.

"Technology is fabulous! It lets me stay engaged with the world around me," she said. "Isolation is a huge challenge, but e-mail and Facebook really do keep me connected."

The 2008 Magnificent Mile was barely over when Witt and her team started planning in February for the 2009 race.

Her work culminated in a proud moment at the Raleigh City Council's Sept. 1 meeting, where Mayor Charles Meeker presented her with a proclamation naming September as "Motor Neuron Disease Awareness Month for the City of Raleigh."

PLS is a rare disease that destroys motor neurons that control voluntary muscle movement. It is a slow-progressing disease that usually affects people after age 50, but Witt, 41, was just 37 when she was diagnosed.

She was a journalist and an avid runner who hoped to qualify for the Boston Marathon when she noticed her left leg was dragging. Dizzy spells and an inability to recover from infections sent her to the doctor for tests, and a year later, she received the diagnosis.

"Unfortunately, it continues to progress," she said. "In the past three years, my neck and shoulder muscles have atrophied considerably. I have to wear a neck brace to hold up my head."

Her left hand is weak, and she has some weakness in her diaphragm. The disease causes spastic muscles and cramps, but physical therapy, medications and clinical drug trials ease the discomfort. She also uses acupuncture.

The Magnificent Mile event kicks off a series of eight races of various distances called the Second Empire Grand Prix. Witt's race is the only one- miler.

"I wanted something that would pop out, and the mile definitely does," she said. "A mile is very approachable. If you're into running fast, it's a speed challenge. If your fitness journey is just beginning, a mile is much less intimidating than a 5K or a 10K."

The Magnificent Mile also includes a kids' fun run and a recreational portion for anyone who wishes to take a little stroll for charity.

Witt's favorite Mag Mile memory is from last year's kids' 100-meter dash.

"There was a little boy named Brady," she said. "He was almost 2 years old. He wore braces to help him walk and run. He totally wiped out during the race. The winner of the women's competitive mile, Kasia Sujkowski, who clocked a 5:15 mile, helped Brady get up and held his hand until he crossed the finish line. I was bawling my eyes out, and so was everyone else. It was incredible."

Watt lives for incredible moments. She promises them, too. Folks who turn out to race, walk, roll, or watch will have a good time, she says.

"The Magnificent Mile is a big old celebration," she said. "A celebration of friendship and camaraderie, the sport of running, and life itself."